My name is Leilani. I have seen the links for this site over and over and thought about setting up a blog, but never really put forth any effort before today. So far, I'm not liking how the functions work, I suppose it'll take a minute or two to figure things out here and become comfortable with the set up here.
I titled my blog Girl On Guard from a conversation I had the day I found I was diagnosed with Breast Cancer. I was talking about my life and some of the trials I had been through, and said I'm tired of being the girl on guard! Little did I know what was in store for me. I was staged at Stage IV about two weeks later. Stage IV, from what I'm told has no cure. I even had a Doctor who looked me dead in the eyes and told me I was going to die from this. My reaction was that of a deer stuck in the headlights, dumbfounded.
I was diagnosed almost one year ago, August 27th, at .. get this, 8:27 in the morning. By phone, I am a truck driver (well was) and was on the road. The Doctor called me bright and early with his cheerful news. I went back to bed. I was on the east coast at the time, and following the staging, which I might add was so excruciatingly painful, I came back to Las Vegas, my home of the last twenty years or so. That was approximately the beginning of October. I enrolled in the Medicaid program for Breast and Cervical Cancer, and immediately started treatment. I cannot begin to tell you how painful it was, physically and emotionally, to go through chemotherapy alone. Chemo affected everything from head to toe. Literally. The hardest part though, was being alone, going through chemo around the holidays. My family, whom I had been estranged from, started communicating with me more (why does it always take a crisis to bring families back together?) and shortly after Christmas I relocated to Northern California. Seemingly the right move at the time. Seemingly...
Let me back up at this juncture, and start at the beginning of this arduous story...
I found the first lump in May of 08. I was not working at the time, and qualified for the program that paid for the initial mammogram. Went for the mammogram, and it did not appear. Now the lump is about the size of a pea. Everyone concerned could feel it. So the Doctor arranged for an Ultrasound test to be done. It still didn't appear. I was instructed to come back in six months and do a follow up, and was told 'it probably wasn't anything to worry about, but we'll keep an eye on it nevertheless'.
Six months later, I was employed and no longer qualified for the program, along with the fact that I was on the east coast, driving. I ended up staying over there and eventually set up residency, where I was able to have the follow up mammogram done, about a year later. By this time, the initial lump was the size of my thumb, and had 'friends', under my arms, and around my collar bones. So when I got the call at 8:27 in the morning, the doctor wasn't really telling me something I didn't already know. He was just confirming it.
So I arrived in California wondering if I had just made the worst mistake in my life. Hopefully not. I applied for the programs to receive Medicaid, and was immediately approved. Ok, that part wasn't so painful. Even got food stamps, but then, I've come to the opinion that California pretty much likes to give any and everyone aid. I applied for SSI and SSDI. It took a bit, but I was approved for both, AND to my surprise, they accepted my diagnosis date as my disability date. So, I am receiving my Disability Social Security (what I paid into the system every working day of my life) and a little bit of SSI. (Are you with me here... this is going to get a bit confusing here in a bit...)
My goal for being in California was to hopefully repair the relationship between my brother and I, which had been strained for years! Putting it mildly. To not go through this alone, and to have my family by my side. In the six months I was there, what can be 'repaired' had been, and once again was yearning for my 'home' in Vegas. The plans were made to come home by the beginning of August.
I arrived back in Vegas somewhere towards the end of July. Immediately went down to apply for the Breast and Cervical Cancer Medicaid, and was told that now because I am receiving my Social Security, which is also more than what would qualify me in the state of Nevada for SSI, I cannot (yes I said CANNOT) receive any medical. So....
Here I sit, Stage IV Metastatic Breast Cancer, in my bones, lymph nodes and liver with no medical coverage.
My blog is about my journey from this day forward, what it's like to have an incurable disease and not know what tomorrow brings.